Living with a bladder reconstruction

If you have a radical cystectomy and your bladder is removed, you will need to store urine in another way (urinary diversion). You can discuss the best option for you with your medical team. They will recommend one of the following options:

urostomy (also known as an ileal conduit) – creates an artificial opening to your urinary system

Reconstructive surgery side effects

The side effects of a bladder reconstruction may include wound infections, urine leakage (incontinence) and blockage of urine flow. The surgery can also affect sexuality.

Your doctor or continence nurse can give you information about the aids available to help you cope with side effects, such as urine leakage. A physiotherapist can show you how to exercise the muscles in your pelvis to stop or reduce leakage.

Urostomy

Also known as an ileal conduit, a urostomy is the most common type of bladder reconstruction. It means that urine will drain into a bag attached to the outside of the abdomen.

The doctor will use a piece of your small bowel (ileum) to create a passageway (conduit). This ileal conduit connects the ureters (the tubes that carry urine from your kidneys) to an opening created on the surface of the abdomen. This opening is called a stoma.

A watertight bag is placed over the stoma to collect urine. This small bag, worn under clothing, fills continuously and needs to be emptied throughout the day through the tap on the bag. The small bag will be connected to a larger drainage bag at night.

Sometimes the position of the stoma can be tailored to a person’s particular needs. For example, golfers may prefer the stoma placed so that it doesn’t interfere with their golf swing.

Positioning the stoma

Before your operation, the surgeon and/or stomal therapy nurse (see below) will plan the position of your stoma. The stoma is usually formed on the abdomen, to the right of the bellybutton (navel). The medical team must take into account any skin folds, scars or bones near the stoma, as placing it in the incorrect place could cause leakage later on.

For the first few days after the operation, the nurse will look after your stoma for you and make sure the bag is emptied and changed as often as necessary. At first, your stoma will be slightly swollen and it may be several weeks before it settles down. The stoma may also produce a thick white substance (mucus). This will lessen as time passes, but the mucus won’t disappear completely.

The stoma nurse will show you how to clean your stoma and change the bags (appliances), which will need to be done regularly. A close relative or friend could join you at this time in case you ever need help at home. There are several types of appliances available, and the nurse will help you choose one that suits you.

The first few times you are changing your bag, allow yourself plenty of time and privacy so that you can work at your own pace without interruptions.

Adapting to the urostomy

A urostomy is a significant change, and many people feel overwhelmed at first. It’s natural to be concerned about how the urostomy will affect your lifestyle, relationships and appearance.

Learning to look after the urostomy may take time and patience. However, after you learn how to take care of it, you will find you can do your regular activities.

You may be worried about rejection, having sex with your partner, or starting a new relationship. Some people with cancer have the support of a partner, while others do not. If you meet a new partner during or after treatment, it can be difficult to talk about your experiences, particularly if your sexuality has been impacted. Many people find that once they talk about their fears, their partner is understanding and supportive.

Although the urostomy may make you feel self-conscious, modern appliances are usually designed to be flat and unnoticeable under clothing. Most people with a urostomy find that they can still wear fitted clothing, and it’s unlikely that anyone will be aware of the appliance unless you tell them about it.

"Of course I’ve had nightmares about standing in front of a room of
people and noticing a leak in my bag. But having a stoma hasn’t been a
problem, and on the rare occasion the bag has leaked, it’s because I
haven’t fitted it properly or changed it soon enough." - David

Getting help

Before you leave hospital, the stomal therapy nurse will make sure that you feel comfortable changing the urostomy bag and that you have a supply of bags. Once you are back home, you can contact the stomal therapy nurse for advice, and your doctor may also be able to arrange for a community nurse to visit you.

Your stomal therapy nurse will usually help you join an ostomy association for support, free bags and related products. You can visit the Australian Council of Stoma Associations at australianstoma.com.au. The Australian Government’s Stoma Appliance Scheme (SAS) provides stoma-related products (aids and appliances) free of charge to members of stoma associations. Visit health.gov.au and search for ‘Stoma Appliance Scheme’.

Stomal therapy nurses

Stomal therapy nurses have specialist training in helping people with stomas.

Nurses can:

answer your questions about the surgery

help you adjust to having a stoma and regain your confidence

assist you with fitting and using urostomy bags

give you (and any carers) information about looking after the stoma

provide ongoing care and support once you are home.

Stomal therapy nurses work in many hospitals. Your surgeon or GP can help you find a stomal therapy nurse, or you can ask Cancer Council’s 13 11 20 consultants.

David’s story

"One day I noticed some blood in my urine. I postponed going to the doctor – I talked myself into it being an infection. I eventually saw sense and went to see my GP who referred me to have an ultrasound scan.

"An ultrasound and cystoscopy confirmed that I had bladder cancer. During the cystoscopy, the surgeon removed the tumour, which was contained in the lining of the bladder.

"My urologist recommended that I have a course of BCG to prevent the cancer returning. Because the drug is inserted directly into the bladder, I didn’t have any unpleasant side effects, except embarrassment!

"After BCG treatment, I had another cystoscopy. The cancer had come back, so it was removed again and I was given chemotherapy. Like the BCG, it was delivered directly into the bladder.

"Unfortunately, a third cystoscopy showed the chemotherapy hadn’t worked, so the urologist recommended that I have my bladder removed. He told me that I would have a stoma. After getting a second opinion and talking to a friend with a stoma, I decided to have the operation.

"During recovery in hospital, I had a catheter in the stoma to drain my urine. Before I went home, the catheter was removed and the nurse explained how to look after the stoma and use the urostomy bags.

"Having a stoma and urostomy bag was difficult at first, but I got used to it after a few weeks. The stoma and bag really aren’t visible and I can do almost everything I did before the operation. I have been swimming and cycling and have travelled extensively. When I speak to anyone in a similar situation, I always emphasise that there is life after having a stoma."

Neobladder

A different way of making a storage place for urine is to create a pouch that works the same way as the bladder. This new bladder is called a neobladder and it allows you to urinate as usual without the need for a stoma.

The neobladder is made from about 45–75 cm of your small bowel. The surgeon will stitch your ureters into the top area of the neobladder (chimney). Urine will drain from the kidneys through the ureters into the neobladder.

After the operation, you will need to learn different methods for emptying your neobladder. A continence nurse will help you do this. See below for more details.

"My continence has improved steadily. The only problem I have is at night, so I set an alarm and wake up to drain the neobladder and avoid accidents." - Patricia

Caring for a neobladder

After neobladder surgery, you will be supported by specialist nursing staff such as continence nurses. Discuss any concerns with your nurse, GP and urologist, and arrange follow-up visits with them.

The neobladder will not have the nerves that tell you when your bladder is full. A continence nurse will help you use a toilet schedule to train your new bladder. This may take several months.

At first, the capacity of the new bladder will be small, but over the next 6–12 months it will gradually increase from 120–200 ml to the normal range of 400–500 ml. This may mean that you experience some leakage when the neobladder is full. You may have to get up during the night to empty the neobladder.

The continence nurse will teach you how to drain your bladder with a catheter in case you can’t empty it completely using your abdominal muscles. This is called intermittent self-catheterisation.

If you need a long-term supply of continence aids, including catheters for draining your bladder, ask the continence nurse if you’re eligible for the Continence Aids Payment Scheme (CAPS) operated by Medicare. Find out more at bladderbowel.gov.au/caps or call the National Continence Helpline on 1800 33 00 66.

Continent urinary diversion

In this procedure, the doctor uses a piece of small bowel to create a pouch with a valve to hold urine. This allows urine to be stored inside the pouch for a period of time before being removed through a stoma (an opening on the surface of the abdomen).

The surgeon connects the pouch to the ureters, which drain urine into it from the kidneys. The pouch valve is joined to the surface of the abdomen, where the stoma is created.

Several times a day, you will need to drain the urine by inserting a drainage tube (catheter) through the stoma into the pouch. Once the pouch is empty, you remove the catheter. You do not have to wear a bag over the stoma.

Living with continent urinary diversion

Continent urinary diversion became popular for a time because it doesn’t require a stoma bag, but it has a higher complication rate. Using the catheter requires good hand coordination, so continent urinary diversion may not be an option if you are elderly or if your coordination is limited for another reason.

A stomal therapy nurse (see above) will teach you how to use the catheter to drain your pouch and will help you set up a schedule so that you are emptying it regularly. You will probably need to empty it about five times a day. It may take a while to become comfortable with using the catheter, but most people find that they can return to their usual activities over time.

It is important to keep the stoma and surrounding skin clean. Care of
your stoma should include daily washing with mild soap and water. Make
sure you rinse the stoma well and dry it thoroughly.

Urinary obstruction

Some patients with continent urinary diversion can develop a blockage caused by urinary tract stones or another obstruction. Seek urgent medical attention if for any reason you are unable to use the catheter to drain the urine through the stoma.

In rare cases, a swollen abdomen and/or abdominal pain can mean that the pouch created to store urine has ruptured. This is a medical emergency, so you should go straight to hospital.

Key points

If the whole bladder is removed (radical cystectomy), you will need reconstructive surgery to store urine in another way. This is called urinary diversion.

In a urostomy, a portion of the small bowel is used to connect the ureters to a surgically created hole (a stoma). A bag is worn over the stoma to collect urine.

Your surgeon and stomal therapy nurse will plan the position of the stoma. It will usually be on the abdomen, near the bellybutton.

The stoma will be slightly swollen at first, and it may produce mucus. The mucus will lessen over time but won’t disappear completely.

You may feel self-conscious or embarrassed, but most people find that the appliance is not visible under clothing.

A stomal therapy nurse has specialist training in helping people with stomas, and can answer any questions you may have, fit the appliance, help you adjust to life with a urostomy and provide ongoing care.

Many people join an ostomy association for support, free bags and related products.

The small bowel can be used to make a neobladder, which is stitched to your urethra. You will urinate as usual without the need for a stoma.

In a continent urinary diversion, the bowel portion is used to form a pouch. Urine is stored in the body for a while until it is removed through a stoma.

If you have a continent urinary diversion, a stomal therapy nurse will teach you how to empty it using a small tube called a catheter.